Aphasia Recovery Connection: Ending the Isolation

Imagine waking up and not being able to communicate with your loved ones. You want to say, “I love you,” but instead “I yellow yellow you” or NO words come out. Imagine listening to your loved ones have a conversation that you cannot jump into because you have trouble forming your sentence.

That is what it is like to have aphasia. Here are a few key things to know about aphasia:

Aphasia is a communication disorder that affects a person’s ability to express and understand language.

The most common cause of aphasia is stroke (about 25-40% of stroke survivors acquire aphasia). It can also result from head injury, brain tumor or other neurological causes.

Aphasia does NOT affect a person’s intelligence; only their communication is affected.

Aphasia affects about one million Americans -or 1 in 250 people.

200,000 intelligent women and men a year are suddenly thrown into a world of jumbled communication because of aphasia.

Aphasia can be frustrating and isolating. Think about how frustrating it would be if you could no longer easily call your best friend and tell her about your day. People with aphasia often become depressed because their social circle has shrunk quickly. Suddenly, they do not hear from their loved ones. They have less coffee dates, men’s/women’s night outs, and vacations. Well, there is hope!

ARC, or the Aphasia Recovery Connection, is an excellent resource for people with aphasia, their loved ones, and professionals. ARC is the largest online support group for people with aphasia and their families. It was started by 2 young stroke survivors with aphasia, David Dow and Christine Huggins, with the support of their mothers, Carol Dow-Richards and Kim Huggins. ARC’s mission is “to end the isolation aphasia brings.”

How does ARC help people with aphasia connect to the world again?

1. Cruises: ARC hosts 1-2 cruises a year. ARC’s life approach to aphasia is to “Get out there! Engage in life again!” At an ARC cruise, people with aphasia and their loved ones can vacation with others that understand aphasia which makes for more relaxing time. Cruises are also easier for those with communication and physical disabilities since they are ADA accessible. As ARC advertises, “You unpack once during your vacation. It is a truly a floating resort! Let someone else take care of you. You don’t have to worry about washing your dishes, making your bed or run errands. People on ARC cruises are very happy with creating long lasting friendships. Our new friends are often found with a new focus on hope to continue their recovery and make weekly connections via Facebook.” The next cruise is in June 2015 to Alaska!

2. Facebook: The ARC Facebook group is quite popular with 2,200 members. The closed FB group is for people with aphasia, their loved ones, and speech-language pathologists. Members can post pictures, write comments, or post videos to communicate to other members. The group’s format is “aphasia friendly” which means it uses simple speech, short sentences, photos, emotion icons, and videos. It is a “no judgment” zone. Members can write comments without having to worry about being judged for spelling or grammar mistakes that are common with aphasia. Since writing can be difficult for some people with aphasia, they encourage members to post pictures, use emoticons, and/or upload video clips of their comments. Members are able to use text to speech and speech to text technology to communicate on Facebook and the video chats!

3. Oovoo & Skype Live Chats: ARC hosts group live video chats with members every 1-2 weeks. For people with aphasia, video chats help make communicating easier. The live chats can imitate “coffee dates” with friends and can become a virtual support group meeting.

ARC’s online forums are for members to share information, ask questions, and give tips. The discussions can be light-hearted such as discussing a funny news story or answering a posed question, “How do you follow your favorite sports teams?” Other discussions revolve around aphasia and its challenges. ARC leaders post questions/polls such as, “When you can’t find a word and are struggling, what do you want others to do?” In the ARC Facebook group, there is also a weekly posting highlighting 1 app to help with communication.

Visit the ARC website for more information on David and Christine! David has written an excellent book called “Brain Attack: My Journey of Recovery From Stroke and Aphasia.” It is a MUST READ for any caregivers, medical professionals, and people with aphasia.